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Welcome to the Coalition for Clinical Trial Equity

About Us

The Coalition for Clinical Trial Equity is a collaborative initiative launched by the Foundation for Sarcoidosis Research (FSR) to address disparities in clinical trial participation, particularly among Black Americans. Our mission is to foster a more inclusive research landscape by dismantling barriers and increasing representation of Black patients in clinical trials. Through collective efforts, we seek to pave the way for more equitable access to clinical trials and ultimately improve health outcomes for Black patients.

Our Goals

The coalition's key objectives are to work together to develop strategies that advance several key recommendations for clinical trial equity stemming from prior research.

Our goals are to:

Address personal and systemic barriers to participation identified by Black patients.

Promote ethical standards and practices to ensure equitable access to clinical trials.

Provide education and resources to empower patients and communities to engage in research.

The Coalition for Clinical Trial Equity is looking to amplify Black patients' voices to shine a light on the barriers that prevent them from participating in clinical trials — whether it’s the cost of participation, travel difficulties, or concerns about job security.

Your story can make a difference! Help us advocate for better support to reduce these barriers and increase representation in research. All stories will be shared anonymously.

Click here to share your experience and be part of the movement for change!

Our Steering Committee

Our coalition is led by a diverse and experienced Steering Committee, comprising leaders from various professional societies, patient organizations, and academic institutions, renowned bioethicists, patient advocates, and clinicians. They bring with them robust backgrounds in health equity and a commitment to advancing diversity in clinical trials.

The Steering Committee spearheads three work groups focused on dismantling specific barriers identified by Black patients:

  • The FMLA Advocacy & Corporate Infrastructure group will focus on ensuring job security and fostering employer engagement to incentivize support for clinical trial participants.
  • The Patient Education & Engagement group will prioritize trust-building and patient education efforts.
  • The Patient Benefit & Compensation group will strive to broaden compensation practices, ensuring accessibility for all patients irrespective of their support system, income, or employment status.

Meet Our Steering Committee:

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COALITION FOR CLINICAL TRIAL EQUITY STEERING COMMITTEE ROSTER 2024

Adam Anderson, MD, Washington University in St. Louis

Andrew Berman, MD, Rutgers New Jersey Medical School

Ann Chauffe DO, MPH, FACR, Boehringer Ingelheim

Arthur Caplan, PhD, NYU Grossman School of Medicine

Brandon Moss, MD, Cleveland Clinic Foundation

Brian McBride, PharmD, Mallinckrodt Pharmaceuticals

Charles S. Modlin, Jr., MD, MBA, MetroHealth

Connie Lee, PSY.D., Alliance to Cure Cavernous Malformation

Divya Patel, DO, University of Florida Health, Gainesville

Donald Richards, MD, Cedars-Sinai Medical Center

Ennis James, MD, Medical University of South Carolina

Jennifer Miller, PhD, Yale School of Medicine

Jessica Propps, FSR Ignore No More Patient Advocate

John Laughner, American Heart Association

Kathryn Washington, MPH Patient, FSR Ignore No More Patient Advocate

Logan Harper, MD, Cleveland Clinic

Mary Oldham, FSR Ignore No More Patient Advocate

Nana Afari-Armah, MD, MedStar Washington Hospital Center (MedStar Health)

Ogugua Obi, MD, MPH, MSc Eastern North Carolina Health

Peter Sporn, MD, Northwestern Medicine

Priscilla Rodriguez, MPH, EveryLife Foundation

Purvis Hunt, MA, Ignore No More Patient Advocate

Rachel Barron, Global Genes Rare Foundation Alliance

Sonya Charles, PhD, Cleveland State University

Stuart Sweet, MD, MPH, American Thoracic Society

Tracey Newman, National Medical Fellowships, Inc.

Yvette Cozier, DSc, MPH, Boston University

Join Us

With a commitment to advancing diversity in clinical trials, we strive to improve health outcomes for all communities. The Steering Committee is actively collaborating to build out strategies in preparation for the coalition’s launch January 2025. For more information about the coalition, how to join and sponsorship opportunities, please complete our brief interest form.

Together, we can make a difference in advancing health equity and improving healthcare outcomes for all.

The Foundation for Sarcoidosis Research (FSR) has secured a groundbreaking confirmation from the U.S. Department of Labor ensuring Family and Medical Leave Act (FMLA) coverage for employees participating in clinical trials, advancing equitable access to treatment and supporting clinical trial enrollment nationwide.

Read the official press release here.

Department of Labor (DOL) sends letter ensuring patient access to FMLA for participation in clinical trials

November 20, 2024

In August of 2023, the Foundation for Sarcoidosis Research (FSR) submitted…

Founding DEI Coalition Members/Sponsors

Partners dedicated to the advancement of clinical trial diversity.

General DEI Coalition Member/Sponsor

Partner dedicated to the advancement of clinical trial diversity.

Made possible in part by grants from the Chan Zuckerberg Initiative and Boehringer Ingelheim.

Actions by the coalition do not necessarily reflect endorsement by every individual coalition member organizations, but reflects consensus by the coalition and coalition members.